Sunday, August 31, 2008

Pablo changed his mind, and Polly is now going to spend the night Monday. Jo Ann is in bed with him as I write this from home. P is asleep, and Jo Ann has just signed off for the night. I bet they are going to get a great night's sleep. It was that kind of day.

We took a long long walk today in the back halls of the fourth floor of CHLA. Pablo is walking very well, and is getting stronger by the hour. Just as we were heading out for our walk, our nurse came in an offered to pull out Pablo's port, and the two thick I.V. lines that go to it. The line had to be changed today, and the timing worked out so we could walk with ONLY one tube coming off P's body, his kidney drain. He's down to only those three tubes. This was a TOTALLY cool treat, and got his spirits and stride up.

The other surprise we got while walking the mean hallways of 4 West? Peter, Brie and baby Lennon came to visit, and tracked us down in this super off-the-path hallway. No idea how they found us, but they did, and it was soooooo great to see them. They've been in New Hampshire all summer; seeing them made me feel like life is coming back to normal. They are back just in time to gear up for P's chemo restart. Peter and Brie and little Lennon are family. Just seeing them, sharing a Play-Doh sculpting session with Peter and Pablo, going to dinner with them this evening, was moving. At dinner we talked about a load of stuff that is impossible to talk about. Stuff I haven't talked about here, even though I've talked around it a lot. Those two are compassionate listeners. On the other hand, when the topic came to where we are getting our fears, terrors, questions, and freak-outs heard, vented and worked out, there was no mincing of words coming from their side of the table. In a loving, but direct way, they told us we need to seek support around the emotional and psychological pressures of being cancer parents. We both have our practices and places where we get support. But I know what P + B were saying: maybe it's time we look into a cancer-specific support resource. We are up for it, and I am going to look into it tomorrow.

Speaking of emotions in motion, Pablo has been getting very sad if Jo Ann or I leave the hospital. When I left this morning to go to church with Jo Ann, he got really busted up. The same thing happened when Jo Ann and I were leaving for dinner. He's never really been like that. This morning, Patricia came to stay with him, and she consoled and played with him. When we returned, Patricia told me that after a few minutes, he was OK. I wasn't. The whole morning, I felt a deep sadness. Parents of ill kids have a natural instinct to give their child whatever he or she wants. I read that in a book today. So, my instinct when he started crying for me not to leave was to stay. Drop everything. Jo Ann would have understood. She probably would have come up in the room and skipped mass. I opted to take a deep breath, and go.

We've been giving Pablo almost anything he wants since his cancer diagnosis. He doesn't want for crazy things, so this hasn't been a major issue. When it comes to giving Pablo us, it's heart-wrenching to say 'No' when we are pulled from his room to go to the outside world. What do we do when he begs us not to leave? Stay, and put off our valuable recharging time? Or do we go, and trust that Pablo's emotional goodbyes are part of the natural evolution of growing up, and that he will be OK? For me, I remember that intense longing for my parents. I'd all but forgotten it until this morning. My longing was centered around a bitter, ugly divorce–a far cry from the biological war going on inside Pablo's body. Yet it yields the same results for the child: the stomach-drop feeling of fear, shortness of breath, a choked-up throat, and grasping at Mommy or Papa, trying to hold us captive. I can't believe I was able to type that description. I was writing about myself as a five-year-old in 1977. Pablo's look and actions are exactly the same as mine were 31 years ago.

Back in reality, things got much better. The night ended sweetly. After dinner, we returned to the room and hung with P. Since Jo Ann was staying, he had no problem seeing me to the elevator. He and Polly walked with me and waited til my car came. While we were waiting for the lift, Pablo gave me a giant hug and two—two!—kisses. I'm so glad I went back up to his room. Going in for the second goodbye was wonderful. And now I can sleep without worry and heartache.

Pablo and I had a great night. He invited me to sleep in bed with him—an upgrade from the 'don't talk, don't touch me' days immediately following his surgeries. The invitation itself cooled my tense nerves, and soothed that part of the parent me that wants—needs—connection with my son.

I read Pablo 'How The Grinch Stole Christmas.' To put a finer point on it, we read it together. The dude knows the whole book, line for line. He kept cutting me off, stealing the next line or two, then leaving me with the weird Seussian bits too complex for his kindergarten tongue. We snuggled, and I tried to accept his night moves: quick jagged body spasms (like the kind you have when you dream of falling), talking and quiet screaming, heart rate rising and falling (the monitor reminds us). I say accept because my instinct is to do something, to help Pablo, to soothe him in some way. We have learned that leaving him alone during those micro-episodes is best. He doesn't remember anything when he wakes, and, of course, he is safe. It's easy to assume (or invent) that these are chemo dreams, or the subconscious horrors of surgery evaporating from his body. But that's just my intellect and emotion in a tug-of-war. Pablo's new repertoire of night moves could also be a natural evolution with no connection to his cancer treatment.

As we slept the night away, he woke around 3 a.m., grasping at his belly. His face was all scrunched up and his eyes were saying 'help' although his voice was silent. 'Do you have to poop?' I asked him.

'Yes, but I don't want to,' he said. 'I'm tired.'

After a moment of breathing through it, Pablo agreed to sit up in bed. A minute later, we were making our way to the bathroom—the two of us, and our constant companion the I.V. pole, with and all its cables, cords, beeps and blinks. What happened next was the first step of Pablo's hospitalbreak: a bowel movement! I am proud of the work Pablo did on that toilet. This is not potty humor in any way. He was scared to let it go. He didn't say why, but I imagine it hurt, or felt odd, to let loose after two weeks of being poked and prodded, cut and sewn. I asked him to trust me; I locked eyes with him; we breathed the way Jo Ann and I taught him to breathe (big inhale, slow release) through pain and fear. A few repetitions of breath and his hands loosened in mine. His scrunched up face fell back to its normal position. And then—plop—history was made.

We got back in bed. I pushed the NURSE button on his bedside monitor. 'It's all yours' I said. And we shuts our eyes, snuggled, and fell out like a scout on a new route.

Since waking this morning, he's gone poo again. That, as we promised him, was his ticket to getting the NG tube our of his nose/stomach. Six days with a plastic tube taped to his face—a record for Pablo. And now it's gone. Somewhere in between poo and tube removal, Jo Ann and Patricia took him on a big walk. He is happy and ready to kick back in his bed and watch more 'Planet Earth' and play with Legos.

Tonight is slated to be another Polly sleepover. Dr Mascarenhas called the room last night and spoke to Jo Ann. He mentioned the idea of starting the new chemo regimen on Tuesday—if Pablo is well enough. We will keep you posted on this.

We are also hoping to have the pathology results back by end of day Tuesday. In addition to the pathology study being done at CHLA, slides of both tumors have been sent to Dr Elizabeth Pearlman, professor of pathology at Northwestern University Feinberg School of Medicine, and the head of pathology at Children's Memorial Hospital in Lincoln Park Chicago. She is the head of the National Wilms' Tumor Study Group Pathology Center, which is located at Children's Memorial. Dr Pearlman has studied more Wilms' tumors than anyone in the U.S., so her opinion and view on Pablo's tumors is of great significance for us—both scientifically and emotionally.

Saturday, August 30, 2008

Our friend, Jennifer, has decided to take on an Olympic Distance Triathlon this Monday! She sent out a beautiful email explaining that the suffering of such a thing would be unbearable if it were done only for herself, so she decided to make it have a larger meaning. She has decided to raise money for 3 different charities in honor of the "tri" nature of the event. She has dedicated the running portion of this event to Pablo's healing and treatment and chose Childrens Hospital Los Angeles as one of the charities. Please click on the following link to read her story and help her reach her goal!

I meant to post this a couple of weeks ago and for obvious reasons, simply forgot. Remembering today and scrambling to find the date of the event in hopes that it hadn't past reminds me to stop and breathe. Thinking of Jennifer's run and her dedication of every step to Pablo's good health will be an excellent way to end this long weekend.

Friday, August 29, 2008

We will continue this long weekend with continued clear intentions, requests and visualizations for Pablo's complete and total healing. My prayers are specific: favorable histology on the tumor removed from Pablo's left kidney with clean and clear margins and Pablo's complete and total healing to begin!

I know that Pablo is held firmly in the hearts of many.I am so grateful.

Here's to the beginning of the end: of summer, of our hospital stay, of Pablo's cancer.

Pablo has had a fantastic day–smiling, laughing, talking and talking and talking. You get what I'm saying, right? Today, Pablo has been...Pablo! With the exception of the 10 tubes and wires connected to every region of his body, you wouldn't have even known he was in the hospital today.Polly says Pablo's been holding court. I agree. Even while Dr. Hardy and I spoke at his bedside, he carried on, deliberating which chapter on the BBC 'Planet Earth' DVD to watch. This is a rarity since this cancer stuff started. When other people are around (even close friends), or when there are just too many people in his vicinity, he goes inward. Not a bad idea, actually!While all that was going down, Jo Ann and her mom, Patricia, were running errands out in the world. Jo Ann returned to the room with a gift for P: Star Wars Legos! He was SO HAPPY to see that Lego box. He shot his arms up in the air, and with a full-on smile screamed, 'Thank you!'

Here's what they made with the Lego set:While they were having fun with Legos, I was at home meeting with a my cycling friend Garry, who is also a home theater contractor. He is going to connect Pablo's TV to our existing media system. We have to keep the play room remodel front moving at a steady clip, so it's done (or close to it) when we get home. Even though being at home working on the remodel is helping our family as much as being here at CHLA, I got sad when Jo Ann showed me the Lego spaceship. I felt like I'd missed something.

That something was Pablo's trip to outer space. Star Wars, Planet Earth, tubes to deliver his liquid astronaut food–today was a total Space Oddity. And his Halloween costume–a space robot–that he ordered through the mail, arrived at home yesterday. It made me ecstatic and sad-as-eff at the same time. I don't care how many cables and cords he has on October 31, we're hitting Armstrong Avenue in Silverlake for some serious trick-er-treetin'.

I know everyone is waiting for the pathology results. The fact is, we are not going to get the results until at least Tuesday. Not sure why it's taking so long. I assume it's cos they are testing the tumor as carefully as possible. One doctor even suggested that the USC/CHLA lab could be sending slides to other hospitals around LA for secondary testing. But this is a great opportunity for us–all of us–to zen out, and practice acceptance. Looks like we are going to need to exercise that muscle a lot in the coming months.

As ever, the thing we can actually focus on this weekend is getting Pablo's bowel to wake up. One small complication with getting Pablo on his feet is that his right foot has been getting very cold, even when covered with a sock and blankets. The docs ordered an ultrasound on his right leg, to look for any potential problem. None of the doctors actually think there's a problem–this cold foot thing is likely nothing. The ultrasound is a precautionary measure.

Anyway, a question about one of Pablo's feet made us very careful about walking today. He walked around the room twice, and wanted to save his longer hallway walk until I got here. He got tired before I returned, so he told Jo Ann he wants to walk with me when I come tomorrow. That will be mid-afternoon cos I am going for a 55 mile ride with my dear friend Joe Scully, my coach, Rick Babington, and 44 riders from Rick's vast circle of pupils. Can't wait!

Once I hit CHLA Saturday, I'll give Jo Ann time to do her thing. She'll sleep at home Saturday night, and I'll pull the overnight shift.

That's all I got for now. Gonna go to the conference room to eat my Zankou chicken dinner. Thanks for Gattas and Connor for the dee-livery.

Thursday, August 28, 2008

Polly and Pablo had a great night together in the hotelspital room, as evidenced by this pic from Polly's phone. Now, if we can just get the surgeons to affix that Play-Doh nose the next time they put him under.....

Good night everyone! We read four books by flashlight. Pablo kept making it turn on and off with his special powers. And he showed me the various ways a flashlight can be held. We had fun shining the light on all the objects in the room, and then on the books. Life could be–could be–nicer if we all used flashlights to light up our lives. ...And if we all lived in forts....

OK, guess who needs sleeeeeep?

PS: Just as we were about to hit the rack, the nurses came by and snagged Papa's bed! No joke! A new patient was on his way up and needed–much more important than big ol' me sawin' logs in it tonight.

Now I am on Pablo's big blue chair, in its 180 degree 'flat' mode. This thing is surprisingly comfortable.

OK, I gotta go an tuck P in again. I hear him playing away over there.

One of Pablo's teachers from Walther School, Laryl, came over today. She brought two giant mounds of homemade Play-Doh, and Pablo played with it for two hours! I ran into her when she was leaving, and I was arriving back on our floor after a bunch of meetings at our new building down the street. I loved seeing her, and so did Jo Ann. Pablo clearly loved it, based on how feverishly he played with her gift.

P slept his butt off. Jo Ann had to wake him up at around 10:30 a.m., so they could go down to floor one for and ultrasound. The ultrasound gives the urologists a look at the status of the kidneys since surgery. Dr. Hardy reviewed the scans and liked what he saw. Pablo has been sitting in his giant blue chair since returning to the room. This is a step forward in his surgery recovery–and the gateway to getting him on his feet, and walking the floor later this afternoon.All of that activity will help us along the way to our next mini-goal: to get Pablo's bowel to reboot. With three surgeries in seven days, Pablo's bowel is in 'standby' mode. The surgeons explained to me this morning that the bowel is one of the organs that involuntarily shuts down when the body is in shock (surgery = shock), which I think is common knowledge. But things always sound so much more fascinating when a doctor is explaining.

The first step to this is–you guessed it–passing gas. The best way to get at that elusive goal is walking as many times as possible during the day, sitting in the chair, laying on his side while sleeping. Anything to get the digestive tract out of the stationary position.

Polly is coming soon, and will spend a few hours with Pablo. Jo Ann and I have the new parents' night at St. Francis High School. I have asked Jo Ann so many questions about the function, I think she's ready to punch me. Which only makes me ask more questions. Like any good husband, I think it's hilarious to drive her crazy. The things I am wondering are: what is the general topic of the night? Is is a meeting, or a mixer? Is there food? How long is it going to take? Can we go to dinner on the way? Wow, I guess that is kind of annoying.

After the meeting, I will return to the CHLA to spend the night. With the comfy air mattress bed, it's a joy to sleep here. Last night, just sleeping here, I felt like a father–looking after P, putting that pillow under his head, asking the nurse about every medication she injected into his I.V. line. I enjoy the moments when I actually feel like a father. It's what I signed up for.

Jo Ann will spend the night at home, and relieve me at 7 a.m. so I can meet the guys from my cycling club at the Rose Bowl. There's a two hour ride going down in the morning, and I could use the miles, and the company. Speaking of riding, Hrach and Nevrik, our friends who own Velo Pasadena, stopped by today. They brought coffee and an insaaaaaaane Armenian dessert that Nevrik's mom made. I have no clue what it's called, but the stuff is addictive.

You know, these posts take a while to write. With IM and email and phone all distracting me (plus helping P with whatever he needs), each post can take a while to write. While I've been writing this one, Pablo has eaten both sides of an orange Popsicle, and polished off two movies on VHS. With the room thinned down to just me and Jo Ann, Pablo is talking–er, hollering requests across the room–and is quite loose over in his big blue throne.

At some point over the weekend, I am going to talk a lot about our feelings around Pablo not being able to start Kindergarten at Pasadena Waldorf School next week. I will say just a little today. It's not practical for me to be down in the mouth about this, but I am. Sadness isn't necessarily a practical emotion, yknow? I had this vision of my little boy starting school, and it being a normal, event-free scene. Kindergarten is particularly important to me. But, here we are.... And I'll leave it at that until we have more time.

Awwwright... We are gonna get him into the walking zone. Will check in later.

Pablo had a great night. So great, it's still not over. He's been sleeping since about 9:30 last night. He woke up only once, proclaiming, 'Papa! I need you over here!' I jumped out of my bed and ran to his side, asking what he needed. 'Can you move my pillow under my head?'

I was happy as hell to remove one of the hospital pillows and place on of his pillows from home underneath his head. It was a pleasure to provide Pablo with comfort that did not require medicine, a nurse or a CT scanner. The kind of comfort any parent could give any kid on any night–at home.

Throughout the night, I woke up countless times to check the monitor that shows his respiration, heart rate and blood oxygen level. By coincidence, it's visible in the mirror above the sink, so I didn't have to get out of bed to look at the machine. I just had to lift my head and look at the mirror. As long as I saw the undulating heart rate line in the uppermost field of the monitor, I knew he was OK.

Sleeping next to a cancer patient is something I've done for more nights than most people I know. I've got trauma around the simple act of sleeping next to someone who could be much closer to death than me. I'll go into that more on a later date, if at all, but let me say that it's impossible for me to just sleep and not wonder if they are OK.

Bottom line is that P had a great night of sleep. As I've been writing, he's been talking, breathing heavily and moving a lot. Sounds like he's having a gooooood nightmare. This could be one of the most 'normal' mornings Pablo has had in the past 105 days. As weird as it may be, I am thoroughly enjoying listening to this.

Wednesday, August 27, 2008

After nearly two full days of waiting, we have a new home–a nice, quiet room at the end of the hallway in 4 West. Quiet except for the poor little baby next door who has been wailing on and off. I have come to expect that every few hours, I will learn or be exposed to something new in this place. I hadn't considered what it might be like to have a small baby with cancer. When I hear our baby neighbor, I appreciate that Pablo can speak, and can understand what we are saying. If crying were still his only way to communicate, and he were still nursing...well, I can't even imagine.

Pablo is settled in, savoring his second consecutive lemon lollipop as he takes in 'Dumbo' for the 1,052nd time. The lights are off; the only light in here is from outside and the computer screens. In our new room, we have a view. Through three window planes (an atrium and a hallway), we can see all the way down Sunset Boulevard. I am sure real estate agents have a bouge term for this kind of view, but I don't know what it is. (If you know, please email me.) Oh! I almost forgot to mention that we have a parent BED up in here! Yes, an actual bed. Not a 'sleeper' or a 180 degree chair. A bed.

Which brings me to my next topic.

I am full of gratitude tonight–for so many things, starting with the bed, and going on to Jo Ann, Grady, Pablo and Polly, Jo Ann's parents Patricia and Harry, Jimmy, Francine, Helen, and on and on. When I think of the army of support we have, it floors me. Every day, there is so much love directed at Pablo, and at our family. It is humbling. Seriously. When this is over, all the love and time and dedication and selflessness that all of you have given us will be turned over, and reflected back to whomever in our world needs it. Another way I want to give back is to have Pablo give speeches with me at CHLA events (like I did two weeks ago), to tell his story in his own words. It will be up to him. If he wants to do it, I'll be right there by his side. If not, he can sit next to Dr. Fleiss, like I did last week, and he can watch me in front of a crowd of people, talking about the wonder of this giant complex of buildings we call CHLA.

When I think how lonely I felt yesterday, last night, and this morning, I realize it must have been a precursor to the warm glow of gratitude I'm feeling now. You know, a darkest before dawn kinda thing. A clearing of the decks, so I could get perspective. I am one of those people who has to feel like I'm stuck in a thunderstorm once in a while, only to realize I've been standing in the sunlight the whole time.

There is a dude who is an intern here, a pediatrician named Dr. Bruckner. His parents are pediatricians in Encino, and, like him, went to USC Med School and interned at CHLA. He is our pediatrician when we're in 4 West, so we're back in his orbit as of now. I ran into him in the elevator yesterday, and he followed me to the PICU to see Pablo. He pulled me into the hallway last night, and again this evening, to give me his feedback on Pablo's condition as well as his perspective on what all the medical services are saying in the reports, and in the hallways. Back channel stuff we'd never know about. I'm not talking confidential stuff–more like subtext and fine details that create a more vivid picture of what/how/why things go down a certain way. Tonight, he told me that Dr. Mascarenhas' orders in the computer are a page long, as opposed to the 'three sentences' that most docs at his level throw into a patient's chart on the hospital server. That makes me feel great about a man we already love, adore and respect. It's really something to feel that human connection with the doctors and nurses here–to feel how their calling in life–to help others at all costs–is linking in with our little boy's fight for life.

I mean, how many times have we gotten excited about our travel agent getting a sweet upgrade on a flight or hitting a home run on a business deal? Or, in my business, a chart position making me feel alive. Ugh. Those things all have their place in life, for sure. But the feeling I get when we connect with someone here trumps all of that. This s**t really matters. And I know it would for any of us. Our kids are everything. They are us, and we are them. They have come into our lives. Some believe they have chosen us. To take it a step further, some believe that our children come to us to guide us down the path. Jo Ann and I believe this is the case. Grady and Pablo hover and sway in life in a way that is undeniable. This is all counterintuitive to the 'do as I say' form of American parenting. But we ain't in the bidness anyway.

In case you missed it in my post from earlier this evening: the pathology department is taking more time than expected to do their tests on the left tumor. Dr. Mascarenhas told us to we'll have the histology tomorrow or Friday. He has instructed the pathologist to email him the report, because he is out of town on the east coast, giving a speech this weekend. The minute he gets the email, he is going to call us.

OK, I am going to finish watching 'Red Belt,' the excellent latest David Mamet film I downloaded on iTunes last night. (By the way, it's no surprise that Steve Jobs is a cancer survivor. iTunes/iPod movies are the PERFECT, practical, user-friendly companion to long days and nights in a hospital.)

Dr M came to the ICU to say that the pathologists need more time with le left tumor. News will come down Thursday or Friday. So, we all get a chance to practice our faith for another 24 to 48 hours.

There's no cause for alarm. Apparently, there are some common technical issues that come up with soft tumors - namely that they are hard to handle, by virtue of being soft and squishy.

Dr Hardy came by a second time to see Pablo. We love him. It was the first time Pablo met him (he was sleeping when Dr H came by earlier). His view is that P is looking good, and all his chemistries are in the good zone. We like that.

Dr Hardy is tall, has a deep voice, a New Zealand accent, and is 66-years-old. Like all of our other docs, he is also a cyclist. That part is actually scary - in a good way.

Meanwhile, our friends and familia in New Orleans are evacuating. Hurricane Gustav is on the way.

There was a cops 'n robbers shootout on Sunset and Vermont a few minutes ago. Both streets are closed down for a block in each direction of that intersection. Someone on the street told me the robbers had hit a store on Vermont, and the gunplay erupted when the LAPD turned up to do 'em in.

Batman was nowhere in sight by the time I got down there, but I'm sure he did his thang and fleed the scene. After all, the Batcave (spolier alert!) is located in nearby Beachwood Canyon. Plus, it's faaaar too hot out there to be rockin a black cape 'n mask ensemble.

Great news! 4 West is cleaning a room for us. Our nurse says we'll be outta PICU in about an hour. What. A. Relief.

Soon, we will be able to walk in/out of the room freely. No super security doors to buzz through. We can have more than two people in the room. Pablo can watch movies on my iMac-no more snowy, crappy commercial TV. Up to now, Pablo has seen commercials only in passing. We'd like to keep it that way. He is watching Cartoon Network and just saw a spot for a new spoof movie; he saw a gun, a handful of sexual references, and some racial humor thrown in for good measure. And it was a 30 second spot. The show he is watching (no clue what it's called) has an Army dude character who - I swear - just ridiculed a man loving a man. Nice.

Now, you might ask, Why don't you just turn off the TV dude? Good question. My answer is: because temporarily exposing Pablo to culture trash is better than him looking at the ceiling. Or watching one of the VHS movies from the vast ICU library ('Jungle 2 Jungle' starring Tim Allen and Martin Short, 'Austin Powers,' and other off-brand Disney stuff) again?!?! We aren't expecting TV or any media (except books and music) to influence or kids' thinking. We teach both of our sons to respect all people, regardless of their skin tone, sexual preference(s), political or spiritual views, etc. In a given week, our kids are around people from all walks of life, so this is more than a theoretical excercise. Our kids truly enjoy the characters in our hood: the $5 Guy and the Silverlake Walker; bearded and weirded hipsters; people with accents from England, Ireland, Australia, Canada, France, and, uh, New Orleans and Milwaukee.

The way I look at this TV scenario is: it's the best we can do in the situation we're in. Once we get back to 4 West, we will cut the junk from his visual diet. Promise.

Pablo is doing fine today. He is more a surgery recovery patient this week than a cancer patient. The focus is on getting his body to return to a fully functioning state. This is pretty quiet business, mostly dependent on time and some medicine. So no major news to report. Each team has been through here - Surgery, Oncology, Pediatrics, Pain Management - and they are all happy with Pablo's surgery recovery. I am hoping we can get the tube out of his nose today. The surgeons have ordered it clamped; they want to see how he gets on with no stomach ventilation. If he does well, they will remove it. This is the first time P has come out of the O.R. with the tube still down his nose. Prior to this, our focus was on eliminating I.V.s and the electronic sensors that are placed on his chest and back. Compared to the stomach vent, those other things are not worth worrying about. They don't inhibit P's movement or speech. He has been laying on his back, not really moving or talking, since Monday. I attribute his rigidity to the nose tube. If the head can't move, the body lies dormant. Except if you're in a bad horror movie. Makes me appreciate the way it used to be (last week).

It's 2 p.m. Sometime between now and 8, Dr Mascarenhas will find us and pull me and Jo Ann into a private room to brief us on the pathology of the left tumor.

Tuesday, August 26, 2008

Jo Ann spent most of the day with Pablo and I went home to catch a few hours' sleep and catch up on work.

Pablo is doing very well, and is medically ready to leave the PICU. Thing is, there are no open beds in 4 West, the soft tumor floor. This is where Dr M wants P to be, and it's also the place we feel most at ease. I am not sure the precise bed count in 4 West, but it can't be more than 12 or 14. Not a lot when you consider the number of kids who need those beds.

The reason we like it so much there is that the nurses and support staff are incredibly knowledgeable with cancer and all the tangential questions and issues that come up around it. Another reason is the bond of being around other cancer families. Saying 'hello' to another parent or child in 4 West is carries a significance. We are all sharing an experience. 'Hello' encapsulates the omni-dimensional reality of the cancer family: mystery, anguish, sleeplessness, self-blame, confusion, hope, fight, faith, endless questions–and joy derived from small victories.

All this talk about 4 West brings me to my next point: part of our job is to fight for what we believe is important for Pablo. Sometimes it's a medical issue, others it's something like hospital real estate. Whatever it is, there are a number of issues every day. They run the gamut and require me and Jo Ann to determine which of us is best suited to deal. Often the determining factor is who is less tired or tweaked.

Having a sick child calls on parents in ways that wedding vows cutely, but not precisely, address. Creating a safe and effective bubble of care around your child is a full time job. Hospitals, like large corporations, are notorious for labyrinthine structure in the physical and administrative realms. Finding out who to talk to–the right person–is a fact finding treasure hunt. Then, actually locating that person is sometimes another treasure hunt. As I write this, I am kind of wishing the 'right' person would pop in here and tell me we are moving to a regular room.

Pablo is fine in the ICU - bed, movies, pillow, the watchful eye of a nurse at all hours–and that's the only truly important thing. But we are fighting cancer as a family. When there's no place for place for Mommy or Papa to sleep, we fight the next day's battle with less than a full unit of energy. When you layer in the emotional scatter bombs that come up all the time, sleep is more than a convenience or a luxury–it's a necessity.

Jo Ann is staying tonight. Maybe P will let her into his bed–she is smaller than me, and can fit in there without cramping Pablo's style. I wish them both a good night.

Grady and I are at home. He's already gone to bed, and as soon as I sign off with you, I'm doing the same. Tomorrow is Grady's first school Mass. His school uniform on Mass days includes a tie, so we will be taking photos in our front yard. Taking pix on the first day of school, or any other special day, is a tradition in our family–especially when we're not all here to actually send one of the kids off on that special day.

Lastly, I want to let you know Dr M came by around 8 p.m. tonight. I saw him through the window of our room, and my heart jumped. He was gone Friday and Monday (yes, he actually takes time off to be with his family!), and I hadn't seen him yet today.

He came to check on Pablo and to let us know the pathologists had started on the left tumor. As Jo Ann said in her earlier post: all our intentions have to be LOCKED on that left tumor being favorable histology!

We should have the results no later than end of day tomorrow. We'll post as soon as we have them. And, hopefully, we will be back on our beloved 4 West floor of the hospital.

Pablo watched watched 'Aladdin.' When it was over, I could tell he was ready to fall out. As the movie played on, I could see his lids getting heavy. It was clear he was forcing himself to stay awake. I kind of love that. Rather than give in to the imposing rule of his body-which had been asleep 90% of the day-Pablo chose to get all Aladdinsane up in here.

As the credits rolled, I asked him if he was ready to go to sleep. He shook his head yes. I gave him a few sips of water and kissed him on the bridge of his nose, the way I used to when he was a wee bambino. He turned his head, closed his eyes and fell asleep.

Now I have to decide if I'm gonna watch a movie or try and sleep, study hall style (stitting in chair, leaning forward, forehead on bed) in this aged room. Either way, by the time Jo Ann relieves me in the morning, I'm gonna be Wisconsinsane, ready for some early morning sleep.

Monday, August 25, 2008

If you sing that headline to the Beatles tune 'back in the USSR' it sounds really cool.

Pablo is sleeping, and well medicated via his new epidural. He was brought up to PICU direct from the O.R.-unusual that they skipped the post-op step. When we got to the PICU room, P was awake, surrounded by nurses and docs. He had (still has) a tube up his nose (running into his stomach), a diaper (he had a b movement on the table, and another when we got to the room (no relation to our arrival) and a second drain-this one coming out of the left side. Of course, P has got his old friend Mr Catheter back in the scene as well.

Being back in the PICU is cool cos of the extreme attention Pablo gets from the staff. The gnarly thing is, we had to vacate our room in 4 West! We moved everything into Jo Ann's car. We're hoping to move into a regular room in tomorrow, and we're hoping to go back to 4 West.

I spoke to Dr Koh, the attending urologist. He said P should be in a regular room by tomorrow. The PICU will be keeping a close watch on his urine output and will be pulling frequent blood labs. Good marks in both of those areas will get him a Get Out Of PICU pass.

Another Monday, and other surgery. Pablo went down the calm, quiet hallway in the surgery department. Another series of moments that we now know well. We kissed him goodbye at the red and white striped DO NOT CROSS line. He knew what was ahead, we knew what was ahead. By turns, he was more calm than ever and a touch scared. He didn't say it. We could see it.

He has some of the most talented surgeons in America working on him. Some of these guys wiped their schedules for this morning in order to work on our boy. Drs Hardy and Stein, Dr Koh, Dr Austin.

Doing surgery when you're in-patient is so much easier than coming from the outside. The upside of coming in from home is P gets to sleep in his own bed. The cool thing about surgery as an inside job is that they get all the administrative stuff and vitals stuff completed right here in our room. Today, all we had to do was wait for transport to wheel their giant bed in here. P woke up a few minutes prior. It was simple. We played with him before the bed came to take him to pre-op. He laughed. God, he is so damn cute! So damn precious!

When he stood up and walked his four steps between stationary hospital bed and mobile transport bed, I noticed how thin he looked from behind. His knees are getting HUGE, but 100-plus days of taking it easy has left his thighs and calves in standby mode. His knees look like they belong to someone else. For now.

We'll whip this chicken legs into shape when we get back to the world.

Dr Hardy just came down from surgery with great news. He got the tumor off, and saved two-thirds of the left kidney.

Our only goal today was to retain as much kidney as possible. This was a HUGE goal, and a HUGE unknown. So it's a MASSIVE VICTORY!!!!

The next goal in our series of goals is FAVORABLE HISTOLOGY of the right tumor. That golfball-sized ex-tenant of Pablo's body is now in the hands of pathology. They will do super-fine studies of the mass to determine histology.

We will get the pathology results in the second half of Wednesday. So, until then, it's zen time! We need everyone's lazer-like intention to keep pushing Pablo along.

You've kept ALL of us going so far. And now we ask that you double down. Keep your emails, blog comments, calls, cards, Bat signals coming!

Dr Malogolowkin a/k/a Dr Marcio just came down to brief on the progress of Pablo's surgery.

The left kidney, he said, was in Dr Hardy's hands hand he went into the operating room. The kidney looks good, and the surgeons were strategizing the tumor removal and kidney reconstruction when Dr Marcio stepped out.

The tumor appears to be the size of a golf ball (exactly as the imaging had shown it), and there are no affected lymph nodes visible at this point in the surgery.

Dr Marcio said he'd never seen so many urologists in one operating room. Jo Ann and I, we like the sound of that.

Another Monday, and other surgery. Pablo went down the calm, quiet hallway in the surgery department. Another series of moments that we now know well. We kissed him goodbye at the red and white striped DO NOT CROSS line. He knew what was ahead, we knew what was ahead. By turns, he was more calm than ever and a touch scared. He didn't say it. We could see it.

He has some of the most talented surgeons in America working on him. Some of these guys wiped their schedules for this morning in order to work on our boy. Drs Hardy and Stein, Dr Koh, Dr Austin.

Doing surgery when you're in-patient is so much easier than coming from the outside. The upside of coming in from home is P gets to sleep in his own bed. The cool thing about surgery as an inside job is that they get all the administrative stuff and vitals stuff completed right here in our room. Today, all we had to do was wait for transport to wheel their giant bed in here. P woke up a few minutes prior. It was simple. We played with him before the bed came to take him to pre-op. He laughed. God, he is so damn cute! So damn precious!

When he stood up and walked his four steps between stationary hospital bed and mobile transport bed, I noticed how thin he looked from behind. His knees are getting HUGE, but 100-plus days of taking it easy has left his thighs and calves in standby mode. His knees look like they belong to someone else. For now.

We'll whip this chicken legs into shape when we get back to the world.

Sunday, August 24, 2008

¶ The other night Pablo and I went for a walk. The shiny tile hallway in 4 West was our path. Pablo's hands held the black halo of metal that serves as the handle of his IV pole. He was determined to push his gangly IV rig without help from his Papa. This was the best option from a physical perspective–the drainage tube that's connecting the his insides to a white plastic bag is awfully short.

As we made it to the end of the hall, we turned around. I had been wanting to ask Pablo his thoughts about his bumps, the hospital, cancer–something. There's an appropriate way to ask a little kid a question so simple that you'll find out what they are thinking without having to spill the beans. So, I gave it a try.

'What do you make of all this hospital stuff?' I asked.

He stared ahead. 'The movie selection here is great.'

That was his response! I swear–an exact quote! I got my whats-going-on-inside-his-head answer and I got to freak out a little. His answer was a total eureka moment to me. I thought to myself, he knows everything that's going on, he's not missing a thing, and none of this is bothering him.

¶ For a week, Pablo has been connected to tubes, wires, drains, direct-to-spine dope infusers. Each day the doctors have allowed something to come off. Since Friday, he's had only an IV line connected to his chest port, and a drainage tube that runs from inside his guts out through his back. Tomorrow in surgery, he'll get back the whole array.

¶ Today, Jo Ann and I sat in his bed and played Sorry! with him. I was playing, laughing, moving my pawns around the board. So were they. But they had no idea that inside my head I was disconnecting the cords and cables and putting Pablo on my shoulders, walking him out the front door of that f***ing place.

¶ A few days a week I ride past the field of green grass in Griffith Park where Pablo and I took the training wheels off his little blue bike. That was a few weeks before his diagnosis. The field where he took the step that connects him to the inner joy generator of children all over the world; that connects him to the connection of connecting; the feeling of utter freedom: moving atop two spinning hoops without the aid of mommy, papa, teachers, babysitters, anyone. You should have seen the smile on his face that day. He couldn't get enough. I was sure that what we were doing wasn't in the instruction manual of parenting. Pablo was pedaling his way across this giant green field, but had no idea how to stop. Without any input from me, he invented his own way: as the bike was angling toward earth, he'd jump off. A bunch of times he landed on his feet. I was p**sing myself with laughter. So was he. That was as much fun as we've ever had together. Major joy and minor dumb on Papa's part. Although he didn't get hurt, he could have. The relationship between danger and fun is well known to all. Next time we go back, we'll drill bike handling and stopping before letting loose.

I ride by that field, and I get fucking hurt and f***ing angry. It happened this morning. A piece of me floats away (hope). A piece of me drops to the ground and tumbles (anger, hate). A piece of me looks right at that field and knows we'll be back there soon (passion). Another piece of me can't look (denial). A final piece of me refuses to feel anything (the trauma survivor's parlor trick).

¶ When Pablo gets released from the hospital, we will take him home. The tumors will stay at CHLA. We will rest him up. We will help him heal. And the minute he is able I am taking him back to that field. I want our life back. I want our summer back. Pablo is five years old. All the five-year-old summer stuff has passed us by. Still his bones have grown into longer, leaner limbs. His mouth has more clearly defined its structure; his words are clearer. His eye/hand coordination is getting sharper by the day. All the tools of youth have become Pablo, and we will have some catching up to do to put these tools to use. With no danger of rupturing the tumors in his abdomen, we can do what we want. When will we get our lives back?

Yes, all of this stuff constitutes the path we are on. It's not a diversion from life. For us, it IS life. But everybody knows this is nowhere. But this is no place to hang around. This is a place to be in, get though, and get out of. Take the experience and run. Plug it into life at the next clear moment.

¶ I think about the people in the park that green grass bike day. Our fellow grass inhabitors. Funny how I remember all of them. The Mexican lovers on a blanket, looking over at us, watching Pablo ride, laughing at all the right moments, shooting concern our way when he fell. I assumed they were both thinking–separately–they'd keep falling in love, falling right off their blanket with the Von's lunch and fall into having a baby and one day bring him to the grass to learn how to ride a bike. Then there was a giant family eating watermelon. The men all wore cowboy hats, the women wore dresses and cut melon and fed everyone. Pablo and I walked by them on our way to the dirt horse trail. We wanted to climb the mountain that had protected us from the sun while riding. We saw an official park ranger sign that warned us of bobcats (or was it mountain lions?) and rattlesnakes. We stood there for a while and looked at the sign, talking about how cool it'd be to see either of those.

But all those people–I keep thinking about them. I can see them looking at us. Were they all in on it? Were they all angels sent to look at Pablo, to make sure he was ready for the wild card of cancer?

'Let's let him have some fun before we bring him in,' God said. 'You angels go down there and let me know when he's ready.'

¶ I'm tired. I can't sleep, which is the body's normal antidote to fatigue. I am tired in places and ways I have no words for. Jo Ann is too.

We are storing energy for things like sitting in a chair for endless hours. I'm storing emotion for times when I need to pour everything I've got into the passion hopper, or ladle some sadness over an entire day. I get happy about things like Pablo cutting a giant fart, or (today) a juicy dump. We both laughed. The corners of his mouth were touching the hinges of his jaw. He was sitting on the toilet, I was sitting on the ground in front of him. We were laughing like a couple of monkeys. It was the kind of scene you'd see in a dream and wake up thinking you might be going insane.

¶ I gotta try to go to sleep. With any luck, I will have a good dream I can tell Pablo about before surgery in the morning.

Remember: magic hour is 7:30 a.m. LA time. The surgery is supposed to take at least three hours.

Please direct all your good thoughts/energy/intentions/love/light to this address.

As I lay here next to Pablo tonight and turn all of this over to God... I am reminded of all of our beautiful family and friends, acquaintances and complete strangers that have our baby in their hearts, prayers, thoughts, meditations, etc.

Pablo is hanging strong tonight. He has asked that I sleep in the bed with him which I was hoping would happen... He may kick me out in the middle of the night, but I'm going to stay next to him as long as possible.

Pablo's surgery will begin at 7:30am Los Angeles time. Please take a moment tomorrow morning to acknowledge Pablo and his strength and ask for Pablo's path to complete recovery to start smoothly.

Saturday, August 23, 2008

Pablo invited Polly for a sleepover tonight–as in, Polly only. No Mommy, no Papa. We, uh, agreed to that immediately! It is a special thing to have Polly sleep over. It will create a new vibe for Pablo. And Polly will love it. In a strange way, it's kind of fun to sleep here. The place has a rhythm and purpose all its own. We are part of it but it could be anybody in this room, getting vitals checked all night. Hospitals don't care who you are, they are just programmed to help the occupants of the beds. They are caring and comforting. And it's easy to see that at night, when the only creatures stirring are nurses.

We've had a steady stream of visitors today, which has underlined the relative peacefulness of the day. This morning, Joe came over to take me on a bike ride. Beth brought lunch, and Ray came over to hang. Sean came over to take me out for a coffee. Joe came back a few minutes ago, and brought Gigi, his beautiful wife. Their daughter Sidney went to school with Grady for the past 10 years, so we've been friends with them for quite some time. Although this cancer episode is totally unexpected fork in everyone's journey with us, we couldn't think of two better people to spend time chatting with in the conference room. Sharona's bringing Mediterranean dinner from Culver City. Then I'm headed across the street to the Vista Theater with Ray to see 'Tropic Thunder.' On the way out, I'll pick up Jo Ann and we'll head home together, just in time to catch up with Grady. He's going to the Sunset Junction festival (around the corner from CHLA) with another grade school classmate, Ruby.

On a side note, while I've been writing this, our nurse came in to administer another enema to Pablo. I know, just what you want to hear about at dinner time. All I need to say is that, unlike yesterday's enema, this baby WORKED! Just another thing going our way today.

We had a great night. Other than Pablo waking me half a dozen times to pee in his little urinal, it was an uneventful night. He woke up for good at 5:30 a.m. Errol Flynn and Olivia deHavilland kept him company with their filmic version of Robin Hood. I caught a few more winks. When RH was over, I woke up ordered us breakfast–liquid for P and chewy stuff for me. When the food trays arrived, I turned on the NASA-strength HEPA fan system in the room. Its purpose is to create a negative pressure in the room, to keep germs inside, away from the hallway. Its secondary purpose is to allow Papa to eat some egg whites and yogurt without the smell of the food hitting P's nostrils. He is violently hungry for REAL FOOD. No amount of orange Popsicles, or total nutrition IV drips can take its place.

Jo Ann and Grady just arrived. I'm off to ride with Joe. See you later.

Friday, August 22, 2008

We are having a good night. Pablo is feeling great. He's smiling and laughing and holding court with his stories and his magnetic playfulness. Things are winding down here in room 439. Jo Ann, Grady, Harry and Patricia have vacated the 4 West wing of CHLA. Jo Ann didn't sleep a wink last night, so she's gonna sleep in...sort of. She's gonna be back here at 8 a.m. so I can go for a bike ride with our friend Joe Scully. Polly is leaving to go meet up with a friend. She's looking forward to it after a week of going home tired as hell and plopping into her bed.

So, as I type this, this hectic room has whittled down to me and P. I'm looking forward to spending a nice night with him. I'm looking forward to whatever conversation we might get into, whatever jokes we might share, and, of course, taking a walk and brushing his teeth. Polly's just pulled up 'Wallace and Gromit' on the iMac. Damn, that computer has good rez.

If Pablo farts tonight I'll feel like we got upgraded to first class. If not, I'll fall asleep in coach and be grateful all the same.

The emails and comments and calls we've gotten today shouting love and support our way have REALLY made a difference. We are smiling tonight, looking forward to a good weekend.

From all of us to all of you: have a great night. We'll talk tomorrow.

In the past hour, we've had a major breakthrough in Pablo's comfort level. He is loving life again, and playing up a storm. One minute he was writhing in pain. The next, he looked up at the TV, laughed and said, 'Dude did you see that?' What a RELIEF!!!!! Jo Ann and I agree on a lot of things in life, and one of them is that no matter what the doctors say about anything, we can always pull up our collars and face the pain MUCH better when Pablo is comfortable and happy.

Being a dude, I am pleased to relay the precise details of today's breakthrough:

• Removal of catheter• 300 CCs of pee right after catheter removal, using only God-given plumbing• Wheelchair ride to ultrasound lab• Side trip to front lobby fish tank on way back from ultrasound lab• Valium and morphine back at the room• Soap enema, complete with 20 minutes of 'holding time'• 400 CCs of pee• One giant vapor-drop• Enema-inspired fireworks forthcoming. Can't wait (seriously) (really)

So there you have it: fish tank, belly pics, a vicious whizz, and a soapy enema.... Sounds better than Aldous Huxley's soma vacation. And not a little like a page from the Led Zeppelin biog 'Hammer of the Gods.'

Jo Ann and I had the 7 a.m. meeting with the surgeons, Drs Stein and Hardy. Both amazing, highly talented, authoritative guys. The kind of dudes whose names are daily preceded by the phrase 'the best in the world.' Seriously. The challenge we faced in this morning's meeting is which one of them is going to be the lead surgeon in Monday's surgery.

Now, I have been in some awkward rooms in my day. I have been the effin' cause of the awkwardity many times. I have been the receiver of it many many times. Today, I found myself telling these two surgeons that i understand their challenge, and that it reminds me of the odd phenom that happens when you get two great bands together to do a co-headlining tour. Everyone is excited about how many tickets can be sold, what fun it will be, etc etc. And then the other shoe drops. Who will close the show?

In the rock touring business, the simple solution is to have each band close in alternating markets. That won't work in our situation–Monday morning is the only show on the tour. Nevertheless, I am thinking about manufacturing tour shirts for sale on the blog. More on that later....

In the end, the surgeons worked it out. But, boy, was that a boiler room.

The bottom line is, we know that both surgeons have Pablo's care at the top of their list. We only care that we have the best oncological surgeon and the best urological surgeon in the U.S. working on Pablo. That's why we sought out Dr Hardy, a 30+ year star urologist, and asked him to join our team. Dr Stein, we have grown very close with. He has mad skills, and is a great communicator. The dude has been the lead on the separation of two different sets of conjoined twins, and he's a master oncological surgeon.

As I write this, it feels like we're set to have a good weekend. Pablo is on his way to recovering from surgery number one. We're rocking movies on the big ol' iMac from my office, he is sucking on an organic lemon lolly from Trader Joe's, and Mommy and Nana are out doing their thing. I'm going to run over to the kooky construction site that will soon be Dangerbird HQ, then over to our house to check in on the construction site that will soon be Pablo's play room and our family library.

Surgery is set for first thing Monday morning. There shouldn't be any major medical stuff to tell you until then. I'm hoping to keep the posts lighthearted over the weekend. I plan to do a couple more personality profiles–there are SO many people to acknowledge in Operation Pablo!

Thursday, August 21, 2008

If you are thinking you don't know what to say to us, or you can't imagine how we feel, don't worry–either do we.

We are gutted by the news of the pathology of the right tumor. We are already so tired and flattened. We have prepared for the marathon, and have not confused it with a sprint. We signed up for the right race, and did the training. It's just that we were not expecting to see a sign at this point that says '26 miles to go.' We've already run 25 miles. We thought the finish line–some sort of finish line–was just ahead. I was ready to dump my energy reserves on the floor and go for broke.

All we wanted was to get the best results with these surgeries. We wanted to go home with our little boy. That's not what God has in store for us. I am confused and I am hurt. Jo Ann is the same. I am so far gone physically and emotionally I can't access my feelings. I am just blank.

I surely feel love and empathy for Pablo, and for Jo Ann and Grady and everyone around us. Polly, who loves Pablo dearly. Jo Ann's parents Harry and Patricia who are the so dedicated to P and us it scares me. And Francine, who is our sister, our constant companion in the hospital, and is staying the night with P and J tonight. All of you, our friends, and even people who we do not know, who are here reading my words every day, sending loving and encouraging emails to us and posting comments. We love you all–I am not just throwing some weird shit out there, I mean it–and we NEED your continued LOUD support.

But something has shifted for us since Dr M sat down with us yesterday, and again today, to discuss the unfavorable histology of the right tumor. As with anything, as time passes, we will get to a place of deeper acceptance. And reality will fill the space that is currently filled with fear and unknown shit. That's how life always goes, and it's no different with this.

The discussions we've had with Dr M and Drs Stein and Hardy fall into two buckets: the new direction in treatment based on the unfavorable histology (or anaplastic) of the right tumor, and both anaplastic and favorable possibilities in the left tumor, which we'll know by next Wednesday's pathology results. (Let call that side WHAT WE ARE DOING.) The other bucket is the statistical outlook. (Let's call that WHAT'S DOING US IN.) This other bucket is the approximation/prediction game that is the root of all fear but entirely necessary to confront.

Let me start with the treatment aspect, and let's talk only about the left side being favorable histology. This is the official start of our super-positive postulate for Monday's surgery and pathology.

So...as we sit now, the treatment is going to be three or four new chemo drugs, for another 12 weeks minimum. Pablo will also receive radiation for a total of 10 days straight (each weekday for two weeks). The radiation will be highly focused to just the tumor bed on the right side–this isn't a Star Trek transporter type thing. The national Wilms' protocol has just been lowered, so P will receive less today than he would've a year ago–each day's dose will last about 10 seconds.

The statistical aspect is also a sea change, and is far more difficult to accept. It's the thing that has us confused, existentially challenged, angry, hurt, and baffled.

Here it is, in plain English.

When the biopsy revealed that the right tumor was dead (or favorable histology), that was the best possible news. It meant that Pablo was in the 90%+ cure / survival group. Those are odds we loved and rallied around. Our faith in treatment, and, frankly, in life, was shaped like a nine and a zero and a plus sign.

Anaplastic histology cuts the number down to roughly 50%. You know we are NOT naysayers or doomsdayers. But anyone knows 50% is a tightrope walk. One way, you are stylin and profilin. The other, I can't utter the words. This is the place where we need your help. THIS is the time we need your help, your intentions, your prayers to the God of your understanding, or the Universe or whatever you pray to.

We now know that the biopsy was misleading. You might be asking 'how can a biopsy be wrong?' That's a good question, and here's why: Wilms' tumors (I have no idea if this is also the case with other tumors as well) are frequently multi-focal tumors. This means that the big tumor is actually made up of clusters of smaller tumors, each with its own living core and dead outer area.

So, if the surgeon cuts a piece out of a multi-focal tumor that randomly happens to be a dead spot, it will yield a false negative.

If this all sounds confusing, or even cruel, remember that cancer is inherently a system of grotesque, disorganized cells. I was up in the CHLA/USC Med School research labs a few weeks ago and got to look into the microscope at healthy cells and cancer cells. It was immediately clear which was the natural, beautiful, graceful stuff, and which was the Wicked Witch in a Petri Dish. We all know that something healthy is something harmonious, and something broken or evil can be communicated with discordance. This theme is carried out in melody, in syncopation, in the rhythms of life all around us. And if you look up the term anaplastic on that link, it tells you that the word means 'to form backward.'

OK. Jo Ann and I have a 7 a.m. meeting with Hardy and Stein. Time for bed.

I have never said this in nearly 100 days of posts: I appreciate having a place to write about my and our experience. This was one of the hardest posts I've had to write. It's incredibly helpful to know my words are being received by people who love Pablo and us and who are with us every minute of every day through this blog.

When you read this, I ask you a favor, as an energy-building exercise for Pablo's surgery Monday: please tell someone that you love them. REALLY let them know. Look them in the eyes and hold their hands and let them know. If it's hard for you, GO FOR IT! Get out of your comfort zone. That's where life happens. If you can, give it away to many many people on Friday, and keep it going all weekend.

If this sounds corny to you, email me and tell me you love me. I need it.

Pablo's surgery went well today. For those of you who just tuned in, who've just had your service restored, Pablo got a drainage tube put in his side today. There was a large fluid buildup in his abdomen–his kidney was literally leaking into his insides.

A LOT of fluid drained immediately. It's remarkable how much was trapped inside his abdomen. While he was asleep they removed the epidural as well. A loss in the pain management scheme, but it was better removed while P was knocked out. He is in a lot of pain, and getting morphine regularly. He's sitting in his big blue chair watching The Beatles 'Yellow Submarine' on VHS. This probably sounds like a flashback to many of you, I know. Later on, we might watch 'Wizard of Oz' with 'Pink Floyd The Wall' dubbed in as the audio track. I've never done it, but I hear it's amazing. After that, we'll just break down and watch 'The Wiz' with Ozzy Ozbourne 'Blizzard of Oz' dubbed in. That's my brand new idea. I have the Ozzy album on my iTunes. So I'm halfway there. Livin on a prayer.

Pablo has been sleeping for over 12 hours. The dude is so zen-ed out he doesn't even wake up when the nurses come in to check on him in the night!

While Jo Ann and I were meeting with Dr M yesterday, Polly took Pablo down to the Radiology Department for an ultrasound. Dr Stein thought Pablo's kidney might be leaking and causing his feet to swell and his abdomen to distend. The ultrasound showed that the kidney is leaking, and now we have another mini-project to sort out.

This project is simple–pop a drainage tube into his side, and watch the yucky stuff unload. The drain is installed surgically, with either general or local anesthesia (I am voting for general). It's a simple procedure, and will provide near-instant relief for Pablo.

The doctors told us that leakage was highly probable, so it's not a surprise that it has. A though plenty of urine is coming out through the proper channel and into his catheter, the internal leakage has caused is belly to distend. In simple terms, the kidney has not fully healed and sealed, so some urine is going in the wrong direction. Getting the fluid buildup away from the kidney will allow it to properly heal.So, with Pablo still asleep, we are waiting for the surgery team to come in and tell us it's stage time.

I will keep the updates coming about this procedure as well as any pathology updates.

Oh, I have one update for you now: Jo Ann just told me that as P fell asleep last night he made an announcement: 'I FARTED!'

Wednesday, August 20, 2008

The only thing I can think of right now is, 'How do I write this? How do I relay this information?'

I know the only answer is that I have to sit down, open the computer, and start typing. The information I have to relay to you will come out. And then I will hit the PUBLISH POST button and it will all be over.

So, here goes....

About an hour ago, Dr Mascarenhas summoned me and Jo Ann to the conference room–the same small white room where we conferred with him months ago. That was the first day we'd met him. Seems like years ago. I figured the location of the meeting today was a formality, because there were a lot of people in our room.

Dr M had just reviewed pathology tests from Pablo's right side tumor. He spoke to one of his colleagues about the results, and rushed to the fourth floor to see us.

He started out by telling us the good news: the margins are good. This means that the thin rim of tumor Dr Stein left on the kidney when removing the tumor is not carrying living cancer cells.

He then introduced something we were not expecting: bad news. Bad news was not on the schedule for today. For this week. This month. Not for the rest of Pablo's life. But there is bad news. Or, to put it another way, less than great news. The biopsy from six weeks ago was misleading–a risk we always knew about–and the tumor was not entirely dead. In the Wilms' Tumor world, this is called unfavorable histology. I will explain more about this tomorrow, when we have some perspective. You are on this journey with us, so I am pushing this very difficult post out of my fingertips and out to you. I made a commitment to myself to document this process on the Pablog. This is a very tough post to write. So, right now, I just want to get this post over with so I can be with Pablo and our family.

This means we have a new treatment plan. The chemo regimen will be much stronger–an entirely new cocktail of drugs–and, once Pablo recovers from next week's surgery, he will start a course of radiation. Five days a week, he will get a blast of radiation on the tumor bed on the right side. We do not know the duration of the radiation course. As soon as we do, I will let you know.

Dr Stein also removed a swollen lymph node. A basic round of pathology shows no cancer in the node. Dr M has ordered further tests to be sure.

If the left tumor is dead (favorable histology), it will simplify the next phase of treatment by simply becoming a non-issue. If it turns out to match the left side's unfavorable status, it too will receive radiation. The amped up chemo regimen will remain in place regardless of the histology on the left side.

To bring you up to date on Pablo himself: he is doing well, but has been in and out of pain throughout the day. A big goal for today was to pass gas (funny for those of you who know how much he likes to drop the bombs). Around 4 p.m., he cut some serious cheese. So that's good. Dr Stein came to see him, and sent us downstairs to get an Ultrasound. He is concerned that the kidney is leaking, based on the distension of Pablo's abdomen, and his swollen feet. The leak is a risk we are aware of, and may require the installation of a drain. If this has to happen, it will go in tomorrow.

I wish I had something clever or funny to say at this point in the post. I do not.

After three months of high stakes living, it feels like we are in a brief period of calm. I can tell because Pablo has been a pretty easy customer since coming out of the fog of anesthesia. As long as he's watching a movie, he's OK. I pulled him out of bed at around 8:30 a.m., and lifted him into the giant upholstered lounge chair that is issued to every room here. To Pablo, this chair is like a mansion from which he can survey his vast domain–a 1980s color TV set, a puffy air-filled hospital bed with a timer-activated night light on the underside, a water closet, and a stunning view of Griffith Park. This morning, the park filled our view. It sat there, quiet and still, with a dense layer of fog in its upper reaches. It looked like Hawaii.

The park is a huge part of our lives–the fun/play/exercise/re-creation part. I can't wait to reintroduce Pablo to that part of his life. As soon as he is able, I am taking him back to our favorite field of grass in GP to re-learn riding his bike without training wheels. We were on a total upswing with that when all this cancer stuff came up. Pablo getting back on the two-wheeled horse is something I'm looking forward to. His limbs have gotten longer and stronger in the past 96 days. He ought to have a better command over his bike and all his physical pursuits once he gets the all-clear from Dr. Mascarenhas.

I also know we are in a period of calm because Jo Ann gave herself permission to leave in the middle of the day–something she wouldn't have done the last time we were in-patient. She went with Dorrie and Helen and Carrie to do yoga at the Awareness Center. All aboard on the express Kundalini.

Tuesday, August 19, 2008

We are now out of the PICU, and settled in Pablo's room in the 4 West wing of CHLA. This is the pediatric cancer ward. We started our CHLA journey in 4 West back in May. We love it here. Feels like home. Last time we were here, Pablo's long curly hair was still in effect. Now, he looks like the other young, beautiful, bald kiddies all over this floor. And like all the kids we saw back then–who appeared to be further along in their treatment–Pablo has a couple of tall chrome poles with four medicine drips and monitors attached to it. So, when we walk the hallways later this week, Pablo'll look like one of those veteran cancer kids. And, perhaps, a family who have just arrived here will look at us and soak up a glimpse of what their near future looks like.

Earlier, I was in the hallway outside the room. I overheard two parents talking to a doctor down the hall. I stopped and observed them. The dad was speaking about risk/reward ratios, full of energy and, from my perspective, nervousness. The mom stood sternly, listening to her husband deliver a big message that, I assumed, they'd rehearsed before this hallway conference. I can only assume all of this from the many similar meetings Jo Ann and I have had with our team. The doctor in this scene stood before the parents, listening intently. His body language suggested passivity and an openness to everything the dad was saying. The parents were, like us the week of May 19, new to all of this. They weren't yet physically destroyed, beyond tired and emotionally pulverized. At least it didn't seem like it.

I have never asked any of our docs about their training in the art of listening. But they are all great listeners. They are great absorbers of fear, tension, confusion, and that certain stripe of terror that envelops the parents of a child with cancer or some other life-threatening disease. Coming from the mean streets of the entertainment business, renowned for its–ahem–selflessness and open ears, I find the demeanor of the doctors and staff here at CHLA a real inspiration.

By the way, Pablo just got a fat vial of Valium. So he's still sleeping. And probably will be sleeping for a long long time.

In the foreground of this pic is the Saban Research tower–CHLA's hub of science and research. As you read this, there are studies going down in that building that are not happening anywhere else in the world. Serious stuff. As an aside, this building also sits atop the Sunset/Vermont subway station. Those of you who live in cities with subterranean transit systems probably think we're behind the times with this late Twentieth Century addition to our megalopolis. Or that we're nuts to travel underground with the potential of earthquakes. Matt from Dangerbird takes the train several days a week from his home in South Pasadena to our office in Hollywood.

The hilltop building you see in the background is the Frank Lloyd Wright-designed Hollyhock House–the anchor of the Barnsdall Art Park where we saw Shakespeare in the Park a couple Fridays ago. Me and my brothers are all heavily into Wright. He is a Wisconsin bro from the hills outside Madison. When Scott and Dean were here during Scott's chemo regimen, we walked the grounds up there. I have a pic of Scott standing at the end of the house that you can (sort of) see here.

Another reminder that we were on a path toward this hospital for a long long time.

We love you all. You know that. We love you so much we know you'll understand that we have an embarrassment of riches in the realm of gifts for Pablo.

We have so so so many wonderful gifts that've been sent from all corners of the earth that we literally have no more room in our house!

We know that sending a gift–something–feels like a great way to let Pablo know you / your family are wishing him the best. He does, and we do, for reals.

If that urge hits you, please feel FREE to send cards or emails (Pablo loves getting e/mail), or make a contribution to the Pablove Foundation or another charity.

On the topic of toys and play.... While Pablo is in the hospital for two weeks, we are having his play room reconstructed. It's our gift to Pablo, and a way to honor the fact that he probably won't be starting kindergarten until a bit later this fall, after chemo is done. It will also be his classroom until he joins his classmates at Pasadena Waldorf School. He will be home-schooled until Dr Mascarenhas gives us the green light for school.

When Pablo returns home from CHLA, his play room will actually be a comfy, soft place for him to play–a step up from the spare bedroom crammed with toys and a hardwood floor.

Monday, August 18, 2008

It's been a long day in a summer of long days. And tonight we will sleep well. Pablo and Mommy are snuggled up in bed at the PICU. I am home with Chili, Beans, Dauphine and Pablo's fish Grinchie. Grady is home with his Poppy, Jimmy. Nana and Boo are at the hotel downtown. Polly and Francine, who were with us all day, are home resting. Francine just send a note to me and Jo Ann saying what a great experience it was today. And that 'PICU' is her new fave word.

Pablo looks great. He is bouncing back much faster than with his last surgery. His face is back to life, and as the hours wore on this evening, he even started to smile and laugh a little. The nurse is hearing all the right sounds in his tummy, and he is peeing a LOT through his catheter. AND he is hungry. All incredible signs of a snappy recovery and a HAPPY BODY. Last surgery, I recall this slate of stuff taking days to come back to normal. Another big diff this time around is an epidural pain relief system. Despite having a hard-wired doping system, Pablo is not juiced up the whole time. When it hurts, he tells us, and the nurse pulls out the "1 through 10" pain chart, and he points to the face and number that corresponds to his pain. And then the nurse injects the proper amount of medicine into the system. It's cool, and it's immediate.

Pablo has eaten three or four styrofoam cups of ice chips. One after another, he chews and swallows them. The dude is hungry. Like Scooby and Shaggy and Cheech AND Chong.

Jimmy is bringing breakfast to the room in the morning. He is the general manager at Fred 62, the 24/7/365 diner that's an institution in Los Feliz, and home of some of the best pancakes in the world. They have these other-worldly mini-pancakes called Billion Dollar Pancakes. One of the reasons I am waking up tomorrow is cos I got a fever for the flavor of those things. All I can say is, if Pablo isn't eating by morning, I'll have plenty of Scooby Snacks!

Jimmy has been a pillar for us this whole time. He loves Pablo, and Pablo loves him. There were many stretches of days over the summer where Jimmy hung with Grady so we could chill with Pablo at home, with one less teenager up in the crib. In our mixed-and-matched familia, there are all kinds of moving parts. One of them is Jimmy pulling up in front of our house to pick up Grady. When Pablo was just old enough to speak sentences, he asked us when he'd be old enough to go with Jimmy. Makes perfect sense. And I'm SURE Jimmy wouldn't mind taking BOTH kids for a weekend once in a while LOL! A few months ago, before Pablo got sick, Jimmy told me that when Pablo gets old enough, he'd be happy to take him on some of his outings with Grady–mini golfing, water park, bowling, camping. That means a lot to me. It's a kind, authentic, loving offer. And I can't wait to see it happen when Pablo gets back on his feet.

Grady has two homes, two sets of parents–he even has two bikes. Pablo, on the other hand, sees his big bro go away every other weekend, and at least one night a week. Sometimes, Jo Ann and I see Pablo dim when G goes away. It's sad to us. But it's also his reality. We talk with him about his feelings, and let him express his confusion or sadness. Over the years, the four parents in Grady's life have gone the extra mile to be the best FAMILY we can be. Jimmy and Marissa come over to our house for Thanksgiving, Jimmy coaches Grady's sports teams, and we all go to the games. We collaborate on Grady's bday parties. Marissa–who is a chef to the stars–makes the most insane food. Especially baked yummy stuff. Her red velvet cupcakes and birthday cakes have added many inches to my waist over the years. Look, like any family, we have our good/bad/sane/insane moments–and we've had ALL of these moments–but unlike many families where divorced/remarriage is involved, we all get on pretty damn well. I am proud of the fact that Jimmy and I are friends–and like friends, we can talk through the tough moments AND laugh our a**es off for the many, many other hours of our years together. And once in a while, just for good measure, we give Grady the business about something–both of us, at the exact same time! I think there was a day when Jimmy came to pick up Grady and he walked out the door without his shoes on, and (possibly) had forgotten his key. That was good one!

I've been wanting to acknowledge Jimmy's constant presence in our lives, and his consistent selflessness since May 17. You know, Jimmy was the second person I called in the wee hours of May 18. I just remembered that. I was driving home from CHLA to get clothes, and to tell Polly what was up (she slept at our house to be with Grady). It was my instinct to call Jimmy. I mean, I woke him up–it was like 4 a.m. Why was it my instinct? Because I signed up to be his son's step father–an additional parent in Grady's life. Sort of like a modular bolt-on addition to the family. From the first time I met Jimmy, I felt welcomed to do this job. So when I got my step father instruction manual and saw the chapter outlining my duties, I remembered that part of my job was to let Jimmy know what big-picture stuff Grady might be exposed to in our end of the family. Jo Ann and I wouldn't have considered for a MINUTE to tell Grady that his little brother had cancer without Jimmy being in the room with us. It was just the natural, right thing to do. If the tables were turned, and I were in Jimmy's shoes, I would want the same thing.

When we sat down with Grady the afternoon of Sunday May 18, it was me, Jimmy and Jo Ann in the room. We all sat with him as he stared blankly at the space in front of his eyes, seemingly in a fog of confusion. It was the same confusion that the three of us felt about Pablo's sudden diagnosis with cancer. But we had a job to do as parents. And it was a bit easier to do knowing that everyone who Grady looked to in his life for protection, nurturing and truth was in the room with him. For me, it helped knowing that I've been through a lot of life, death, ups and downs with the three others in that room. It's easy to feel like life is happening to you. But when you stand among those who truly know you, it's easy to know that life is happening with you.

OK, that is the end of my second wind.

Thanks to ALL of you who have sent emails, text messages and comments on the Pablog today. If you still aren't sure about the power of intention, take a look around....

We are with Pablo in the PICU (pediatric intensive care unit). He is doing fine-sleeping soundly. The surgery went very well. So well, in fact, that Dr Stein was able to save one-third of his right kidney!!!!!!! THAT IS THE BEST NEWS EVERRRRRRRR!!!!!!!!!!

That means we are going into next Monday's surgery with a huge advantage. We always knew that the CT scans could only display a two-dimensional picture of the tumors. This meant that Drs Stein and Hardy would get the best view of the growth while Pablo was on the table. We hadn't counted on a n y of the right kidney surviving. It wasn't like we were casting a negative vibe-it just appeared that the tumor had taken over the entire kidney. A cancerous nephrecta-squatter.

What the surgeons found with their first-hand view-and this is a huuuuuuge lesson for all of us-is that the majority of the tumor was behind the kidney, and had grown up and over the top, toward Pablo's front side.

When Dr Stein described this to me and Jo Ann, we both had the same thought: THAT explains why Pablo's distended baby belly had NEVER gone away! We are thinking that we could have been seeing the effects of this tumor for many many years and had NO IDEA that IT could be the cause of his distended tummy.

I mean, we wouldn't have ever GUESSED that there was a tumor in there. His doctors never suspected it either. We did talk about his tummy a lot. It was curious that, even though his limbs were growing and lanking out, and his general musculature was getting stronger-including his tummy-there was still something pushing his belly outward.

Anyway, back to the play-by-play: the tumor was massive-the size of a cantaloupe–and behaved very nicely during the procedure. There's no evidence of spillage. Dr Stein says the blood supply to the kidney is great; he was able to reconstruct the kidney and and the collecting systems; he believes there will be no problems with the kidney. On Thursday, an ultrasound test give the doctors a view of urine leakage if there is any.

Pablo is still asleep. His mini Lego Batman and Robber figures are in his hand. He is under the influence of two different pain meds, and has no less than nine drips, oxygen in his nose, and machines connected to his frail little frame. Two of these bags are blood drips from his faithful and loving teachers, Gloria and Laryl.

We will be in PICU for at least a total of 24 hours-which means at least 2:30 p.m. tomorrow. From here we will transfer to another area of the hospital. Although this is a seriously dated area of CHLA (giant chrome fixtures and first generation digital readouts on the wall) we have a nurse who sits right outside the door, logging Pablo's charts into a computer and dashing in any time a machine starts to beep. Pablo's room is looming right above the corner of Sunset and Vermont. We can see the Hollyhock house from here-the mansion at Barnsdall Art Park, where we saw Shakespeare in the Park two weeks ago.

When we were up there, Pablo and I stood at the edge of the estate and looked down on CHLA, which sits direcly below. We may have looked right at this room. Funny how these things come full circle...